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PDA awareness day and Dinkys annual review shows that awareness is sorely needed!

I had Dinkys annual review yesterday.

Parents evenings in both mainstream schools haven’t exactly gone down very well. Actually I only got invited to one, and they just handed me her ‘suspected levels’ at a TAC meeting in the second mainstream. Dinky’s PDA was hindering her progress, and no one could tell how much.

So 1st annual review. A room full of people from the special school, the social worker and dinky.

It was rather nice having Dinky in the room, she was only staying for a little while, she kept saying “mummy” and touching my arm. She was very excited to have me at school!

Once settled, the principal got everyone to write one thing they admired about Dinky, one thing they thought was working well, and one thing they felt Dinky could work on for the next annual review.

It was nice to hear everyone say Dinky made them laugh and has a cheeky grin, and helps the other learners sometimes. It was interesting to hear that actually her writing is considered good by the head of key stage (I will come to that later), and although half the room praised her joining in, apparently she needs to attend more of her speech therapy sessions! Her teacher said she needed to push herself, which Dinky completely misunderstood and put her hands on her chest and pushed herself backwards several times, which raised a chuckle across the room.

We watched a slideshow of dinky in her class. Then Dinky’s views were given, dinky had been given a large piece of paper and with the teacher was asked

What do you like best about school

My Dinky, ever trying to give the ‘right answer’ wrote ‘yoo’ as in her teacher.

What is your favourite lesson

She wrote hoes ridia – she wouldn’t talk so her teacher helped her sign horse riding.

What lesson don’t you like

Dinky drew some lines (pretty sure this was avoidance) the teacher wrote ‘another learner being silly’

Who are your friends

Dinky wrote her friends names, she basically missed off the child who pulls her hair and put the teacher on.

Is there anything you don’t like about school

Dinky drew a picture of her with a sad face being held by the wrist by an adult

This almost had me in tears. Dinky sat there while everyone took that in, the principle said that from now on Dinkys plan will be amended and wrist restraint will no longer be used. Which is great, although I suspect the next annual review will be a picture of the double elbow.

If they insist on pushing her, they will have to restrain, it is how it works.

Apparently everyone got to see the review pack the school prepared before the meeting, except me.

Behaviour wise, they are using pda stategies and with the more constantly used indirect language dinky is starting to trust them more, they are seeing a massive reduction in meltdowns. 11 physical interventions in March, 3 in April (although they missed the fact that April was only 2 weeks due to Easter holidays).

Just under 50% of meltdowns were due to demands, over 25% were transitions, about 10% (hard to tell on a pie chart) activity interrupted and the final 15% is other learners behaviour

Not all meltdowns are cause for physical handling, they have realised that I was right, give her space and time and she will calm faster than someone touching her.

My views. Well, basically I was told there is no point in amending the statement because they (the LEA) won’t do it. Also despite the blatant character assassination of Dinky by her former school quoted in the current report, there is also no point in getting a new ed psych report as school don’t believe that she will engage for the ed psych as she is still not receptive to the school doing assessments.

The school believe that possibly in 4/5 years, when Dinky reaches secondary age, she may well be able to join a mainstream if they have a special unit attached. I wasn’t expecting that kind of prediction, but I said “over my dead body will Dinky return to mainstream- I already said I didn’t want dinky in a mainstream environment, she has been in two mainstreams within 1.5 academic years, and neither suited her. She couldn’t cope with them and they couldn’t cope with her. The ONLY reason you are seeing ANY progress is because you can give her the environment she needs to learn without always knowing she is learning mainstreams, even ones with units can not hope to provide the environment you can. They will constantly push for her to join the class and Dinky can not be in a class of 30 constantly being given demands- it won’t work.”

I was told this is a far off future thing to work towards and I said I will not work towards my child going back into an unsuitable environment. I reminded them that I have had dinky at home far longer than any school has managed so far since she reached compulsory school age! That they do not know what that was like when dinky was being excluded for walking around the school on bucket stilts, or being in the wrong place for too long, or needing a break from the classroom, in most mainstreams square pegs are thrown in the naughty bucket and left there.

They conceded and said that it wasn’t well thought through as yes most mainstreams would love to give children the environment that this school can offer but they can’t. I said they haven’t had Dinky long enough to make any real predictions.

When it came to speech and language, they contradicted themselves, one minute she is considered within lower normal range, then said she won’t engage so they don’t know for sure. (Reading the report they like the other two speech and language therapists before them, they didn’t do a whole test,just managed one module in one test and one module of another. The one she showed age appropriate skills she also made some errors which show Dinkys difficulties with non literal language and imagination- yet further on in the report she has a great imagination 😒) I do know that dinky isn’t as far behind as she was with speech and that is due to her weekly speech and language sessions.

When the teacher (new teacher) started talking about Dinkys participation being really good I had to hold back my tears of joy! They agree the free flowing early years style teaching suits Dinky and allows her to join in. She writes more often and is starting to make progress academically! I was overwhelmed! It’s amazing, and something I had not heard in mainstream apart from her reading.

Her reading is above average for her age! I was so utterly proud and overwhelmed in that moment. Dinky has always been interested in reading and I have fostered that from a young age. Dinky has an amimal and lego fascination and I have brought tons of books to help teach her reading and about the animals she loves so much.

They said Dinky was ‘able’. Yet reading the report she is roughly that of a reception age student still. It’s great that dinky doesn’t have severe learning difficulties like some of her class, but I don’t see that the small progress she has made in a term by participating allows them to believe that:

A. This period of participation will carry on, as is, throughout the next 4/5 years

B. Dinky will be able to zoom ahead by two years to catch up with her mainstream counterparts.

I would love to share their optimism, but their belief is contray to evidence of Dinky and PDA in general. I have had to come to terms with many things as a parent of a child with PDA and one of those is that Dinky will never be able to participate at a mainstream level appropriate to her age. To raise my hopes, without knowing the child fully is cruel. What if I was still in denial hoping for a mainstream return? Do they believe they have cured PDA? Or will cure it? No, so why? Why make these statements about a child they have known for a few months?

I believed the fight would be over once dinky went to a special school that I wouldn’t have to explain her autism or her more specifically her PDA. Again I told by a school they understand the condition but the annual review suggests otherwise.

This is why awareness days matter, because when a condition is little known, parents and families are given the wrong advive, impression and are let down time and time again. The only way this school are going to learn is to have dinky in their school for the next 4/5 years, watch her lose her writing ability again for the 4th or 5th time, watch her go through stages of participating and being happy to being unable to cope with any demands and being visably anxious. They will have to see that their exploitation of periods of relative calm will come back and bite them in the backside! I did say to the social worker after the review that it is ll well and good for them to say this but this is the time that the other schools started having problems, just wait until they see the second term in full swing. Maybe it won’t be until the third term when she realises that this is not a holiday camp and they start pushing her more like they said the review.

So there is good news mixed with the not so good. The social worker said that it seems odd that her small progress is being used against her, and the social worker doesn’t feel she will cope in a unit in mainstream, she has the report from the previous social workers and the last school , she knows kids in the units and Dinky doesn’t seem suitable for them. She agreed I had very good reason to not want a return of mainstream and for what it is worth she believes I am right. the point I made I’d that Dinky is 7! Secondary is a long way off. At least they are not trying to get rid of her now.

I would love to refuse restraint but-
1. I would be a hypocrite because I have to restrain Dinky for hers and my safety (mostly hers)
2. They only do it when she is a danger to herself and others- which is reasonable

I could take her out of school, but I am completely alone, and the 11 months she was home wasn’t good for our relationship and I was completely exhausted, I was becoming ill from the stress of dealing with the PDA with only 9 hours respite week and surviving on 4-6 hours a night sleep with no one willing to let me have a little sleep.

We’re a little way behind you on what sounds like an all too familiar path. We’ve home educated this academic year – and you’re absolutely right – it is exhausting. We’re just about to embark upon a specialist placement and I’m all over the place about it. I don’t know what to ‘realistically’ expect at this stage. If this placement fails then we’ll be back to full time home edding but that would take some serious thought and restructuring to sustain it over the next decade! Trying to function on not much sleep is just horrible. I hope things keep getting better for you and Dinky. I hope the same for us too. Xx

Where I come from, there are ‘no’ special schools… Everything is mainstream, and IF you’re lucky enough, your child will receive appropriate modifications. If not, they have high expectations for compliance, OR they leave the ‘child’ to sit and do nothing so long as the ‘child’ isn’t being disruptive to the other students…aka, (glorified babysitting).
Needless to say, I homeschool now…this “inclusion” system they have here, is a joke…it’s the governments way of saying, “We’ve axed education funding in such extreme ways, that we need to find a pretty name to attach to it so it appears to be a good idea.” NOT!!

It seems madness that they try full inclusion some children just do not cope in large class sizes.
I don’t get it, surely the most severely affected children, like those with profound learning disabilities, are not in mainstream with ‘accommodations’?

Today I told another parent at a disability fun day what school my daughter goes to and her reply was ‘wow. She doesn’t look disabled enough to go to that school’. The thing is there are a lot of children that don’t fit into special schools or mainstream, it’s all well and good if you have a partner or family that can help, my dad won’t look after my daughter for more than a few hours at a time, and her dad seems allergic to responsibility- his parents do not like the fact they don’t have a ‘perfect’ granddaughter, they see autism as a defect, which upset me a lot at the time. You can lead a human to information, but you can’t make them think!

I guess we are lucky we have a special school system, but it isn’t perfect, but at least it exists.

Unfortunately, yes, even the most profoundly affected are still in mainstream classrooms. Albeit with a full time program assistant. Not sure what they hope to gain?
According to their school philosophies, one would call it “tolerance”?! In my opinion, that’s not only degrading to ANY person, it’s also VERY damaging! “Tolerance” is something one shows for the neighbors dog who barks incessantly at 3:00 in the morning… NOT for another human being with a disability far beyond their control! “Acceptance” yes, “tolerance” and even “patience” are quite questionable?
There are children with autism who are severely affected and non verbal, children with severe down syndrome, etc…all in mainstream classrooms.

Great news re some progress, and it sounds like she is relatively happy if she is joining in at times. Like you, I’d be worried that it’s the novelty factor, which will wear off 😦 I’d also stick to your guns about no mainstream – you know best for your child and they are just trying to take a general view that every child should go to mainstream as that’s inclusion – but we all know it isn’t really inclusion. Early days – give them time and hopefully they will see what you see xx

Yes, I love the fact Dinky is actually learning. It is a huge step in the right direction, however I agree that inclusion rarely is actual inclusion.
Dinkys second mainstream was supposed to be inclusion, yet she was constantly excluded- from activities, from the classroom, and for short periods of time from school itself. That is not inclusion.

The point is that just because some children can transition back to mainstream and the idea is that mainstream is always an option, is just not right for some kids.

How can a child who can’t cope in big groups or take demands meant to just go back to mainstream after a short period. I really wish they had waited before mentioning mainstream ‘with a unit’.

Hopefully they will be able to put their hands up and admit they were wrong (unlike her last mainstream), otherwise it looks like I will be repeating last years mission at the autism show- I will be looking for the ‘right’ special school.

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Thoughts on the crossroads of law, politics and society - for when 140 characters just won't do. This blog contains general information and commentary on legal matters. It is not intended to provide legal advice. This blog discusses the law in England, unless otherwise stated.

Hello, my name is Julia and I’m an adult living with a diagnosis of Pathological Demand Avoidance (PDA). I also have a diagnosis of ADHD and Psychotic Episodes. PDA is a lifelong Pervasive Developmental Disorder and was first described by the late Prof. Elizabeth Newson in 1980. PDA is an Autistic Spectrum Disorder (ASD). Despite PDA being older than me (just) there are still massive gaps in its recognition, peoples’ understanding and its diagnosis by professionals. I’m one of the lucky ones and this is my story…….